Monday, August 31, 2009
Advocacy for Dummies
Advocacy for Dummies or Advocacy 101, however you want to call it. I think I am failing...
It is so hard to keep fighting and to be upbeat when all doors seem to close in front of you. Today was one of those days, when Zoé's PT told me he wouldn't write a report to further support her case in front of a medical insurance denial.
I felt betrayed. It really did hurt, because after so many months of battling the system, it touched a very sore spot.
You think you can trust people, but at the end of the day, you are on your own, trail blazing the path...for some better future outcome.
Zoé is part of the equation, and when your child becomes a case that seems unable to be resolved, you don't think twice. You simply have to keep the fight.
It's just hard.
I am so happy to have this blog to vent my angers and frustrations.
I am so sorry.
Irina, a longtime friend sent me an email today to tell me what an inspiration this blog was, and I am trying to keep it that way, but the fight takes a lot out of you, trust me...
We got our 20-month questionnaire and evaluation last Friday, to validate Zoé's eligibility with the Regional Center, a bureaucratic machine that decides, according to 5 criteria, whether your child can be on board or not.
The day before they told me that "as of September 31st, Zoé will no longer be part of the system." What a blow! Well, the next day her file had been reviewed and we were told that Zoé had been moved from "high Risk" to "global delay", whatever that means...
Then, some of the questions blew my mind:
-Can Zoé stack 8 cubes to make a tower? Who does that, at 20 months???
-When you draw a straight line with Zoé, does she copy you? uh, yeah, but it's not that straight.
-When Zoé paints, does she paint over the border of the paper? Yeah, she paints on the floor, her chair, her hair and my pants!
Well I'll spare you the rest of the questions. Questions which make your child "qualify" or not, for what? I am not quite sure.Maybe it will stay in her file for her college applications!
Sorry for the ranting. Thank you for your support, dear blog readers.
I'll try to be more positive next time around. I have to keep smiling, for at the end of the day, Zoé brings joy to my life and paint to my laundry basket.